Living with symptoms, diagnosis and treatment of Graves Eye Disease (Thyroid Eye Disease) and Hyperthyroid--What to expect, questions to ask, and more.

As you read, remember this . . .

All of the information I write about is based on my personal experience. As I have lived it. I hope the information you find here is useful, informative and educational. Remember, please don't use the information you read here as a substitute for your personal medical care or professional medical advice.

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April 2012

I've been down this road before. The kind of road where you have just enough familiarity with it to antipate each twist and turn. Even though the twists and turns are the same, I must say, I've NEVER gotten used to them. Here's what's up.

If you read my post a couple days ago you know that my doctor had me switch back to Methimazole from PTU. I'm taking 20mg twice a day. A good dose. You'd think that after 4 days the typical symptoms you have when your labs are out of bounds would subside. But not mine. Especially what I call the heart "fluttering." The sensation that feels like your heartbeat has a vibration to it. When I get up and move around quickly I get lightheaded.

In the past when this would happen I'd go to work and pretend all was normal. But today I decided not to go to work. For those of you reading this who have Graves', you know how difficult living with symptoms can be. The added stress of trying to work through it, as I have for 7 years now, is sometimes too much.

Finally, I'm at the point where the anti-thyroid medication treatment plan is wearing thin. I would love to hear from some of you who've had either surgery or RAI and how you did with that treatment plan. I worry immensely because of my ongoing eye complications. The "active" eye phase is supposed to stop after 30 months. My eyes have had problems for 80+ months with no end in sight (pardon the pun!) There's always the risk that either of the two options remaining can negatively impact the eyes, including the eye protrusion, and possibly severely.

Today my eyes look normal to most people. That is except for me and my U of M eye specialist. The thought of having complications due to an alternate treatment plan is downright frightening. I don't know if I could handle the eye bulging all over again, and taping my eyelid shut at night. I suppose things could be worse, but all I want is the constant ups and downs of Graves' to end. It's too much of a roller coaster and this is the worst I've felt in quite some time.

The other question I have for readers is this: for those of you seeing both an endocrinologist and an eye specialist, are they in the same location (or working out of the same hospital) or are they seperate? In my case, my primary care physician works out of one hospital, my endocrinologist works out of another hospital, and my eye specialist works out of yet a 3rd hospital. And none coordinates care for me. I do that. U of M has outstanding Graves' specialists on the endocrinologist front, so I'm thinking of switching doctors after seven years with the one I have. Just to have better coordinated care and discussions around alternate treatments (most notably because if I did have eye issues I'd have my eye specialist perform the surgery). Make sense?

Today was especially frustrating for me. As a problem solver I just want directions to just make things better. Like the ingredients and directions on preparing a recipe (something I'm good at). But health issues don't work that way. Even when you follow "Doctor's orders" to the letter that's still no guarantee you'll improve. So that's where I find myself late this evening. Wondering what to do next knowing if I go back to bed the "fluttering" will increase (for some reason when I'm lying flat it's worse) which will only add to my anxiety, and sleeplessness. So just like I did nearly 5 years ago (this May) when I started my little blog, I sit here typing away hoping to help someone, maybe even you, understand how complicated, and frustrating, Graves' Disease really is.

It's late and I just got home from my local CVS drug store where I picked up my new prescription. After nearly 5 years on Propylthiouricil (PTU) I'm switching back to Methimazole. Yesterday when I visited with my endocrinologist I told him that I hadn't been feeling well, and I could tell something was amiss. In addition, I've been having difficulty concentrating, feeling irritable, and in general not well. My lab results also came in first thing this AM and they're all out of the normal ranges. In adjusting my medication he wants me back on Methimazole to see if we can get a handle on the TSH, T3 and T4 levels where the PTU has failed. So that's what I'm going to do.

The importance of thyroid hormone and your brain functioning:

I also learned a lot about the effect of thyroid hormones on your brain during my visit yesterday. My doctor explained to me that the thyroid hormones (which regulate your body's metabolism) are essential to good brain functioning. Even though it weighs only ~ 3 pounds, your brain represents 25% of your body's metabolism. It takes a lot to keep it working properly. My doctor explained that people with poor thyroid functioning often feel edgy, irritable, even angry, and sometimes depressed.

My eyes:

On Tuesday I saw my eye specialist at the U of M Kellogg Eye Center who went through my normal 2+ hour screening and examination. He explained I have corneal abrasions (scratches on my cornea) on both eyes, about 25% on my right eye and a little less on my left eye. That's from blinking on dry eyes and seem to be getting drier by the minute. The good news is that my eyes, especially my right eye, has receded slightly. At least my eyes didn't move outward. But the bad news is I'm having pain with my optic nerves at least a couple times per day. It mostly happens when I turn my eyes quickly from one object to another, but not always. It's like a searing hot pain behind the eyeball. Oh it's painful. If you've read other parts of my blog you know that I've been dealing with Graves' for almost 7 years now and my eyes are still moving. That's more than twice the length of time of eye involvement for me vs. the average time it takes a patient for their eyes to settle down. Frustrating for sure. Especially when you never know where they'll wind up.

So that's it. I'm switching medications, I have issues with my eyes and my brain functioning is impaired due to the ever-fluctuating thyroid hormone levels which at this point in time are all abnormal in measurement. I'm headed back to my endocrinologist in 4 weeks to see if there is improvement.

Some days I feel like I can conquer anything including Graves' Disease; other days I feel like it's conquering me. Anyone else struggling as I am lately? Feel free to share your story. I'd love to know.